Hi, this is my first post although I have been following for a couple of months.
My husband (aged 70) has been unwell for the last two years becoming more tired, irritable and unsteady. He lost his appetite and almost developed a fear of eating! He has type 2 diabetes, diagnosed 11 years ago following a heart attack. He has been taking both omeprazole and metformin for a number of years. Following a routine blood test he was prescribed folic acid tablets for a couple of months but was admitted to hospital shortly after finishing them following another heart attack. He was kept in hospital for two weeks and then had CABGx4 surgery last April. Iron tablets were prescribed as he was anaemic (his lack of desire to eat and the surgery was blamed).
He recovered well but then had a 'small but significant' stoke in June, that hospitalised him for another month and although he was still reluctant to eat things did improve. His stroke left him with slight aphasia and unable to explain things easily and his unsteadiness and confusion were put down to that also. His chest scar was causing him discomfort. His gp changed his 20mg omeprazole for 40mg esomeprazole, thinking it was reflux. When that made no difference he was told to continue taking it and also prescribed amytriptyline. A blood test to check his iron levels this time came back with "your iron is ok but you are anaemic with vitamin B12, you will need some injections- here is a prescription". No other information was offered.
The injections made him feel worse and he was convinced that I was in cahoots with the doctor to kill him out of the way! He is blaming the injections for the way he feels. He did improve, but has now lost his desire to eat, is now suffering from episodes of 'panic' and breathlessness and is generally unwell and ready to give up. He had his first 3 monthly injection on Thursday and some more blood tests (liver and kidney function, thyroid, ferritin, folate and ,because I asked, D3). He has to return for more on Monday so hopefully something will come of it.
I have learned a lot from this forum and it gave me the courage to ask for the other blood test and to point out to the ANP that the guidelines had changed regarding intervals between injections. I still feel very helpless when my hubby is clearly struggling and would not manage to read the posts although he is listening now to what I explain.
Where next?
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Janma123
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Make a list of your husband's symptoms and present this to his doctor and ask him to treat him according to his symptoms and (perhaps) even re-start him on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
"but you are anaemic with vitamin B12, you will need some injections"
Has he been diagnosed with pernicious anaemia?
Has he got copies of his blood test results/medical records? It should be possible to find out what his B12 levels were and if he was diagnosed with PA.
Is there a family history of PA or other auto-immune diseases?
Might be worth joining and talking to PAS (Pernicious Anaemia Society) who can offer support and pass on useful info.
"He had his first 3 monthly injection on Thursday"
Did he have any loading injections at start of treatment?
This is a series of B12 jabs given close together to try to raise levels of B12 in body quickly.
UK recommended treatment for B12 deficiency without neurological symptoms is....
6 B12 loading jabs over 2 weeks then a jab every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neurological symptoms is....
A B12 loading jab every other day for as long as symptoms continue to get better (could mean every other day jabs for weeks even months) then a jab every 2 months.
Your GP may not know that BNF B12 treatment guidance has changed recently.
You mention confusion and unsteadiness, these would usually be considered as neurological symptoms.
Does he have other neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs, memory problems, numbness, problems finding the right word plus others?
If yes, my understanding (I'm not medically trained) is that he should be on second pattern of treatment if in UK.
If you're in UK, I'd suggest reading the documents below.
These links above mention that some drugs can affect B12 levels.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines. Does not mention recent BNF change.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Sadly I think that sometimes problems are put down to ageing when there may be a treatable cause. I suspect there is sometimes age prejudice against older patients.
Thank you Sleepybunny. He hasn’t been diagnosed with P.A. as he only had the one blood test to see if he needed to continue the ferrous fumerate or not. I will ask for numbers and rattle a few cages. From the NHS website I think he should have been monitored for a long time because of both the metformin and Omeprazole/esopremazole
People can spend years trying to get a diagnosis. PA and other causes of B12 deficiency are not always as well understood among GPs as they could be.
It's worth checking his records...there was one forum member who found out that they had been diagnosed with PA and never told.
The fact that GP used phrase " you are anaemic with vitamin B12, you will need some injections" makes me think the GP suspected PA.
The BSH flowchart in my post above outlines when PA can be diagnosed in UK.
UK test for PA is an Intrinsic Factor Antibody test (IFA). IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.
Even if he does not have PA, he has other risk factors for B12 deficiency eg the drugs you mentioned.
Stomach Acidity
Some forum members have been treated for high stomach acid when actually they had low stomach acid. Symptoms of both conditions are similar.
It's vital that anyone who is B12 deficient gets recommended level of B12 treatment. Even that is not sufficient for some on this forum. Many self treat.
Consequences of inadequate B12 treatment can be severe.
There are so many interlinking events that have happened over the last 12 months, the heart surgery, stroke, long term medication and not being inspired to eat have all played their part. Hopefully going to the doctors with more information and knowledge will help.
The B12 injections, in addition to his anemia, are helping to repair his vagus nerve which was probably damaged due to the late diagnosis of his B12D.
He probably needs more frequent injections to sort out the neurological and subsequent psychological symptoms that appear to be getting worse.
The vagus nerve tells the brain about stomach and other gut issues and the brain controls the stomach and gut this way as well.
Aging also causes loss of the sense of smell so food doesn’t taste as good.
How does he react to acidic foods like vinegar, orange juice or tomato salsa? I find these settle my stomach because I’m low on stomach acid. The reflux symptoms are the same for too high as well as too low stomach acid. Unfortunately the Drs treat this symptom incorrectly most always as too acidic.
When starting on B12, the symptoms initially appear to get worse. I get very angry sometimes for a few hours right after my injection. It subsides and is followed by a sequence of other symptoms. They can repeat the same way after each injection and I’ve come to realize that they are an illusion and are a good indication that my nerve damage is being repaired and stronger signals are going to my brain. For me, hunger is one of those symptoms but I’ve also heard of nausea after injections. Keeping a logbook of symptoms and assessing a severity score helps sort out these good symptoms from very similar ones that are due to the deficiency.
What were his blood test results before he was started on injections? The nerve damage may have been going on for a while.
He also needs a daily multivitamin and folic acid supplements to support the B12 and the repair of the nerve damage.
I will try the acidic foods although he has complained of lemon juice 'burning', his diet is very limited and his appetite small - apparently when he was a child he would eat meat and potatoes, almost no veg ( apart from baked beans) and very little fruit. He is better than that now but not much!
I am going to ask the doctor for his blood results for the past two years and see what was being monitored and where his results lay - our doctors are very reluctant to release any results other than 'no further action needed'. I am sure his B12 will have been checked before his heart surgery but nothing is certain!
At the moment he is going through episodes of feeling unable to breathe, taking very small breaths and then breaking out in a cold sweat. Unfortunately this is making him unable to sleep properly and compounding the tiredness and confusion. Flu has been ruled out.
Hopefully we can get over this hurdle and life will improve.
If you click on the individual written submissions, you can read each letter/report
"so will pursue it tomorrow"
Probably worth following up any discussion with GP with a letter to GP reinforcing your queries about treatment. See letter writing link in my first post.
A letter could include symptoms, test results, relevant individual/family medical history, extracts from UK B12 documents etc
Letter to GP about under treatment of B12 deficiency with neuro symptoms
If for some reason your appt tomorrow is cancelled, might be worth ensuring a letter reaches GP before next appt. and/or talking to PAS.
In UK, my understanding is that letters to GP are supposed to be filed with a patient's medical records and are therefore in my opinion less likely to be ignored or lost, compared to info passed on by discussion or on photocopies of documents.
A letter to GP won't guarantee it is read but should guarantee it is on file. In past I have referred to letters previously written to GP in an appointment so they had to bring it up on screen.
I keep copies of any letters I write and take a copy with me to appts, in case it has been lost.......
I don't live in Scotland so it's possible that there may be differences in what happens to letters to GPs in Scotland compared to other parts of UK.
If you are acting on behalf of your husband, it's possible that you may need his signed written permission to do so.
Words of Caution
Some UK GPs may find it difficult to cope with an assertive patient/relative of patient. Be prepared for possibility of GP/patient relationship deteriorating.
Listening to Patients with B12 deficiency
See blog post below about how patients with B12 deficiency sometimes struggle to get GPs to listen to them.
"He is blaming the injections for the way he feels."
A lot of people on forum say that their symptoms get worse before getting better.
Has GP monitored his potassium levels? Some people experience a drop in potassium levels when they first start B12 treatment.
Link below mentions possible side effects from Hydroxycobalamin injections. Hydroxycobalamin is the form of B12 that NHS uses most of the time for B12 injections.
There are other forms of B12 eg cyanocobalamin, methylcobalamin and adenosylcobalamin.
Thank you Sleepybunny I will follow up the petition link and the other information.
We ended up at the out of hours doctors last night and it seems he has some fluid build up in his lungs that is causing the breathlessness. So back on diuretics and something else to deplete his system.
He seems more positive this morning so will see how we get on.
Firstly I am so glad he has stopped omeprazole and switched to esomeprazole. I was previously on omeprazole but it caused cysts to form in my stomach. These now need monitoring in case they become cancerous. Just what we need more stress.
My understanding is 40 mg is treatment dose then drop down to 20 mg once symptoms subside. I was on 40 mg for too long and only came to light when meds were eventually reviewed after I lost too much weight due to having no appetite!
It annoys me that we need to keep at these medics to ensure that we get the treatment we actually need. Doctors are too quick to jump on the most likely option.
Your husband is fortunate in having you in his corner. Make a list of his symptoms and take it with you to appointments. Then they won’t side track you and send you home with wrong medication.
Thank you Ashbe. These PPIs are supposed to be wonderful but like antibiotics now seem to be overused and are contributing to additional problems. I hope you go on well.
I can understand how doctors are not always aware of new developments and thinking as there is so much being fired at them but there may needs to be an organisational rethink and more specialisation.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
So fed up with feeling like this...
Low B12 after oral tablets 
Feeling lost
I'm desperately seeking advice...feel like we're going round in circles
Advice moving forward?
